Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

11 WEEKS AFTER PARTIAL KIDNEY REMOVAL AND STILL IN PAIN ,CANT BEND,WEAR JEANS ETC

USCherub
Posted by

I left the hospital with THREE... THREEEEEEE... days worth of pain medication. After that, Tylenol was all I was allowed. NO ibuprofen, NO aspirin, as those are blood thinners, and in a partial neph, the kidney can sometimes bleed in the weeks after. Stop the ibuprofen if you can for now, it's too soon. I think docs underprescribe narcotics to avoid constipation and dependence, so I'd not worry about their motives in wanting you back to work.

If you haven't had a BM in the entire week, that's no good. I spent 3 days in the hospital (this past December) and they injected my IV with laxatives twice a day. So if you've gone a week, I think it's a good bet that it's really irritating an already tough week. Doc should have sent you home with some softeners too. If not, BUY SOME ASAP! 

The first week is a challenge for sure. But I think youre right where you should be, especially now that you got a scan to rule out complications. It's just a rough time.

Im at about 8.5 weeks out since my DaVinci robot surgery, and just don't listen to anyone that says robotic or laparoscopic is a breeze. They carry their own set of challenges. I've done more research than I ever cared to, and robotic surgeries really beat the hell out of your guts.

Also, don't let people tell you that partials are so much easier than radicals. Whole the incisions might be smaller, you are left with an organ that is cut in half and has to heal.

I think you're doing great. Youre online and communicating, which is a good sign even if you're in pain. I don't think I was, and all in all I'm ok. 

Simurgh
Posted by

Hello there.

Was not oxycodone ever an option? I have massive scar tissue from 3 ops and pain from it all 5 years later and oxycodone turns out to be a winner.  That is, of course, if you're prepared to accept addiction tolerances in the first place. I think the stronger opiates can be the least of several evils when you're battling c. 


God bless.

USCherub
Posted by

Simurgh, oxycodone was what I had for 3 days. But that's it. I called once to try to get a little bit more, but was told no, not without coming back to the hospital. I had no way to get there bc I was only a few days oro and couldn't drive. So Tylenol it was. :/

Simurgh
Posted by

Hello there,

Apologies if I missed it in your post. It's not entirely surprising that staff don't want to bother with 'Oxycontin'/Longtec/Shortec(?) given its class A status and dreadful reputation in this country as elsewhere, but a mere 3 day's worth (@6 x 10mg?) is going to cause more problems than it remedies, given no experience with it a priori. It's 1.5 x oromorph's 'strength' and was prescribed for you, so you -must've needed it- as a prescription rather than tramadol for example. Further apologies if I have presumed the dosage.


Seems your ordeal was a combination of poor judgment and standards by people who should know far better. Has a pain clinic, aside from that, ever been discussed? I'm feeling kind of outraged for you at this point, but, as always,


God bless you and yours.

USCherub
Posted by

Simurgh, no worries at all on assuming dosage, bc they were gone so quickly, so long ago, that I don't even remember. 

The hospital I am with in the U.S. is one of the top 3 in the country, yet my experience has been that even though my surgeon has been FANTASTIC, the rest is just so huge that it's a mess. Per example, my surgeon called me from home this past Monday to discuss this most recent pain. He wanted a CT scan immediately to check for pseudoaneurysms. Once the hospital itself got around to scheduling though, it's almost 2 weeks since I called to ask if I should be concerned. I really just have to laugh sometimes bc by now I always know that what the doctor says, and what will actually happen, are wildly different.

The pain is still there, but actually much less than this past weekend, so I'll just wait for the appointment. Tylenol it's been for the last 8 weeks, Tylenol it shall be for 2 more.  :)


In your profile I see that you have had a number of surgeries. Were they all RCC that had popped up in your other organs? What an ordeal you've been through.

Simurgh
Posted by

Yeah. It's been a ride. Some including your Pres. deride the wonderful Brit NHS, but it's saved my life three times so far; the problems lie with its birth -- example -not designed for such a large population / for sooo many people to demand simultaneously during flu epidemics and Co. 

Political conundrums aside, my original 2kg tumour spawned a fair few offspring but all slow-growing, all detected back in 2013, and fit for termination by surgery, Arnie. They may of course 'be back'. (ugh). Others have it worse.


Tylenol / paracetemol seems a bit limp for pain relief btw. God bless.






Cherries17
Posted by

Hello, I was reading your post which was helpful to me didn’t realise thou it’s two years on since you wrote it!!!

I do hope you are on the mend now.... please feel free to chat even if it’s only a rant!!!

I’m 5 weeks pist op that’s after right still having to take high doses gabapentin..... if I don’t can’t walk... would love to know how you got through and a catch up on how you are today!!!! Well I hope and much better, take care x

Cellogirl45
Posted by

Was this specifically to me?

Happy to chat. 

Cellogirl

Mr Username
Posted by

Hello,

 I hope you are doing better since reading this.

I too have had a kidney procedure involving a Partial Nephorectomy for Cancer of the Kidneys, in the United States. 

Since my procedure 10 years ago, I have suffered with chronic pain issiues directly related to the procedure. 

Weeks after the procedure my condition was not improving but instead I was experiencing pain in the flank area of the procedure. Stabbing pain, a sharp plucking feeling and extreme pain the more physical I became. Lately, spasms. All in the flank area. I was told it might be a hernia( It wasnt) . I was told it was in my head( pain is associated with nerves that go to receptors in the head, but pain is an indication of damage of nerves, so no and yes to that) . I was told it would go away( it didnt). 

I was lied to. I was NOT told that sometimes, when nerves are severed, they do not reattach and the muscles no longer function. This is called Atrophy. That is why you have a huge bulge. Also, scar tissue can attach to the lining of your stomach area, whenever that scar tissue is irritated by being pulled on, it can cause extreme pain. 

I have been on pain medication since the surgery.

There is no fix to our problem.

I am now on disability due to the pain issues.

I hope you are doing better.

I suggest anyone that gets any procedure involving a kidney surgery of any kind, have them explain EVERYTHING, including the risks of permanent nerve damage, scar tissue issues, Atrophy of the muscles. 

Doctors do not cover these issues. Period. 

USCherub
Posted by

Oh. My. God. Mr. Username, your post nearly made me cry at the potential prospect of this degree of lasting pain. I'm still not feeling back to myself at 11.5 weeks, and my doctor tells me that is definitely not normal. He suspected a pseudoaneurysm, which was ruled out at a follow up CT scan. He also does not understand why I have pain at the large incision site upon doing a straight sit-up (he tested me in the office, I thought I was in middle school gym class again). I simply cannot engage my care without incision and flank pain. Doctor did the CT scan, ruled out the major stuff, so I'm just left with, basically, "I don't know what else to tell you." 

Yes, none of this was known in advance, and I suppose many many many people have uneventful full recoveries, but I came to this site in part to convince myself that I wasn't crazy. What a choice we have: possible permanent pain, or cancer. :/

Thodgkin
Posted by

Hello,

It has now been about a month after surgery and most of the pain has improved but I'm now experiencing the flank pain. It feels like my kidney is just aching and spasming. Not getting any pain relief from the tramadol they prescribed for me and they don't seem to think I should'nt still need pain meds. This has been a horrible experience and I just wish to return to normal. I am the sole provider for my family and I financially need to be able to return to work but physically I know I cant do it yet. I feel like people who were here to support me and help are getting tired of it and feel like I'm just exaggerating the pain because I'm being lazy. No one seems to understand that even if I'm not having pain in this moment I know soon as I get up and start doing stuff the pain will begin and there is really no relief once it does. I also have a burning/numb sensation on my abdomen. The doctors said that is nerve damage and could never go away. They definitely did not inform me of all of this before hand. I'm sorry to hear that you are still having pain. 

Simurgh
Posted by

Hi

It's -or can be- a delicate balancing act with nerve damage pain; I'm of the opinion that opioids like tramadol and the undoubtedly heftier longtec/shortec can be brilliant if controlled correctly. But these drugs will be highly addictive, so one question that is important is -- do I really want the possibility of being 'hooked' on what are Class A  restricted drugs in GB, even if they work great at first. At first...

And that's the thing really. Do you want the dependency AND the painful effects of the initial disease. If so, you and your GP must be on the ball with frequent med reviews and what-have-you. Some would rather cope with the pain than 'befriend' opiates in the first place.

God bless, and give it some thought.

Mr Username
Posted by

Hello,

Welcome to the chronic pain club. I am sorry beyond words of what you are going through. 

I went though the same BS song and dance. I have a dead spot below the incision site going down my left leg. Above it,I experience spasms, snapping feelings, extereme dead feeling, chronic pain as in some one stabbing me. Sadly, it never went away. That was 12 years ago. The muscles at the site have atrophied, meaning without nerve impulses, they no longer work and when I stretch it feels like someone is tearing my body apart. Just in that area. I get swelling internally and my pants get tight. I have to lie dawn and get the swelling to subside. I was told scar tissue has attached to the lining in my abdomen and that creates the pain. I do know nerve damage has resulted. I heard the same crap. Its in your head....You have a hernia.....I had a doctor actually do an exporitory surgery for a possible hernia. instead he found a mess. He told me he couldnt repair it and said it would possibly put me in a wheel chair if he hit a nerve. I have been on disability since then. I couldnt deal with the pain and am on opiod medication. I have talked to many others reguarding this same procedure. The fact stands, those undergoing kidney surgery are at risk for damage due to scaring, damaged nerve endings and atrophy of affected flank musclesAs I stated. I am sorry this has occured to you. I was 50 when it happened, I had a spot of cancer on my kidney that mabe I should have just left go, who knows. eather way, whats done is done.

I did qualify for disability after getting an attorney to represent my case. I can do limited things, mostly whatever my body lets me, to a degree. I work on small engines as a hobby and sell them to buy RC airplanes.

It was recommended by my Attorney to find a hobby.

Well, just take life one day at a time. There is no fixing your issue. I do know that.

Take care.

Sincerly,

Scott Firman

sfirman9@gmail.com 

Simurgh
Posted by

Well, hello.

"There is no fixing your issue ..." doesn't sound like help and support, now, does it? Which is the primary point of these fora. There is -always always- a way to accomplish anything, given enough willpower and, of course, time. Pain Clinics in this country do a fantastic job, for example. I'm sorry for your own pain, truly, but posting that there's no fix isn't necessarily the case.

(Btw, crafting engines is pretty smart, I recall my 1/20th scale Klimov, now long destroyed. : ( )

Forza.

Mr Username
Posted by

Re; Balancing act,

I agree with you concerning the pitfalls of being dependant on drugs to manage pain. 

I cannot argue with anyone that would choose to not take any kind of drug to deal with chronic pain. however; Lets be realistic also.

If all attempts to mask,or subdue a chronic pain issue that greatly affects the life style, everyday way of living for a subject to the point they require a wheel chair or must greatly limit their activities, the choice of opiods should still be offered as an option. 

Allowing the government to dictate what medications work best for pain management due to a past practice of abuse by doctors or patients where as some actually benifit from that type of pain management.

No two patients are alike as far as ability to tolorate pain and each patient should be handled on a case by case situation as to what methods of pain management, be it neurostimulation, or opoid medication.

By dictating,or limiting medications due to media hype, past abuse practice, or whatever , the ultimate choice should be the comfort level as described by the patient.

Not the physician.

Consistant monitoring of the patient is recommended, and in most cases manditory. 

My grammar may not be great as far as this writing, but the message is conveyed as intended.

Thankyou for your comment.

Sincerly,

S Firman